Platinum refractory?

[WorriedHusband]

Hi All,

First time posting here. Good luck to everyone in their battle with this malignancy!

After finding cysts in her ovaries my wife's ca125 was found to be at 823. She had her debulking surgery Feb 23rd 2017. She was staged at 3C with high grade serous ovarian cancer. Tumors along with ovaries, tubes and uterus and mets on intestine, diaphragm and stomach resected.

Chemo started on March 23rd 2017. CA125 was 465 before the 1st infusion.

1st cycle: Taxol and Carboplatin. However Taxol couldn't be administered due to severe reaction. 18 days later CA 125: 76

2nd cycle April 13th: Taxotere and Carboplatin. 19 days later CA125=18

3rd cycle May 5th: Taxotere and Carboplatin with Neulasta OnPro (she was neutropenic after 2nd cycle) 18 days later ca125=49

Her Ca125 showed a nice decline after the first and the second infusion but after the 3rd infusion we saw a jump back up to 49. We are utterly disappointed. We'll see if this is a trend when we get her next blood draw before her fifth infusion on jun 16. If it keeps rising I guess they will change the meds from carbo-taxotere to something else? I hope this was a one of rise due to cancer cell death or other inflammation in her body. I hope her cancer is not platinum refractory.

Has anybody had this kind of rise after a meaningful drop in ca125? Could cancer become resistant just after 2 cycles of chemo?

Thanks!

[Shebatoon]

Hi Worried Husband. I read the posts on this forum for info and inspiration. What a great group of ladies and support ppl such as yourself. I was diagnosed with High Grade Serous Uterine Cancer (little info). My understanding, from reading, is high grade serous cancer cells maybe resistant to chemo drugs. Has your wife been tested for the BRAC gene, if positive, there could be more effective chemo drugs available. Hopefully she's not resistant.

[WorriedHusband in reply to Shebatoon]

Thanks for your reply. She doesn't have the BRCA gene mutation.

[kristinaapril]

Welcome, though sorry to meet under this condition.

Honestly, the ca125 marker is so sensitive, that it can be elevated for multiple reason, such as infections, colds, etc. Sometimes that damn marker seems to do whatever it feels like! Oncologist often look at the marker trends, rather than one elevated number, if that makes sense.

Also each individual is different with the range they have with the marker. My mom often runs low (sub 20) with still a extensive disease.

I would wait until the next marker test and go from there. If not, you could ask your oncologist for a CT scan.

I would try not to worry, though easier said than done!

Wishing you and your wife, the best of luck.

[WorriedHusband in reply to kristinaapril]

Thanks Kristina.

Yes our oncologist wants to understand if this is an upward trend.

We'll find out next week.

Good luck with your mom!

[CallmeMum]

Hi Good Sir,

Welcome to this lovely forum where we all stick with each other.

I'm sorry to read about your wife but please don't be too alarmed by the CA125 although a good indicator for some people it's not for all CT scans are the things that show exactly what's what.

My advice would be ALWAYS ask the oncologists questions (they hate them) anything your unsure of, don't consult with Dr Google he's way out of date with his numbers, although shocking as it is to hear the word cancer, you find a way to cope if you're unsure of what the consultant asks speak with your CNS (cancer nurse) also ask for advice here there are lots of lovely ladies here who can help wether they have cancer or like me support someone with cancer.

[WorriedHusband in reply to CallmeMum]

It's so hard to stay away from the internet. There is so much research going on and I don't want to miss out on a treatment that can help my wife. Sometimes Gyn oncs have biases for certain treatmens and are not open to try alternatives.

I am looking into getting second opinions.

Thanks and good luck!

[CallmeMum in reply to WorriedHusband]

I forgot to add the drs only know what they read off their screens and from their books

[Tesla_7US in reply to WorriedHusband]

worried hubby, biomed pubs, aka biomedical publications, GOG182 is a good place to look for the latest ovca abstracts. If you're into research, you can find good info.

[remarkablynice]

Hello,

I'm not sensitive to the CA125 so that marker doesn't work for me.

I started carbo/taxol at the end of October 2016. I had two treatments and then was hospitalized with a fever in December (couldn't find the reason). I had a CT that saw growth of the disease. My gynaecologist oncologist said she didn't want to over react since these drugs were the gold standard. She wanted me to continue for two more treatments followed by another CT.

The next CT showed extensive spread. Hind sight being 20/20, I wish I had pushed to change to a new drug, instead of allowing the cancer to get so far ahead.

Now on second line. CT in early July after 4 treatments.

Hopefully the CA125 will go back down. But if not, perhaps you could ask for a CT after #3?

Best wishes to you and your wife.

Nancy

[WorriedHusband in reply to remarkablynice]

Hi Nancy,

I hope your second line treatment works much better for you.

What chemo drugs are you on now?

Good Luck!

[remarkablynice in reply to WorriedHusband]

I'm currently on Caelyx (called Doxil in some places).

I have my 4th treatment at the end of the month, praying for good results.

[Lily-Anne]

Hi

Not unusual to have fluctuations rising only with no downward dips are the concern. High grade serous cells respond the best to carboplatin so try not to worry just yet

LA

[WorriedHusband in reply to Lily-Anne]

Thank you, will try.

I read your story. You are a trooper!

Wish you the best of luck.

[LesleyGreengran]

I know it's hard not to worry but the ca125 may go down again next time. It's not completely reliable.